Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Josie Martinez had her first seizure at the age of fifteen. In actuality, her epilepsy diagnosis served as her introduction to the chronic condition.  

“I didn’t know what epilepsy was at the time, and I was so shocked by the diagnosis that I didn’t ask many questions,” she said. “Doctors told me that I couldn’t be alone, couldn’t swim alone, wouldn’t be able to drive. And when I started my meds, the side effects kicked in right away, making me feel disoriented, so I just dealt with it as well as I could. Honestly, I felt really alone.”

This diagnosis upended many aspects of Josie’s high school experience.

“My body wasn’t handling the seizures well and I was so exhausted all the time. My neurologist actually had me stop doing activities, including gym at school,” she said. “I wasn’t doing my best academically either. I felt like I could do better, and I really did try, but I was so confused about my condition, adjusting to new medications, learning about my triggers and dealing with side effects, so I held myself back in a lot of ways.”

One of Josie’s first medications led her to deal with episodes of rage. These emotions – combined with her overall confusion about her diagnosis – meant that it took Josie years to fully come to terms with her epilepsy.  

By the time her mid-twenties rolled around, Josie felt that she was finally learning to live again, despite a few speed bumps.  

“Even though I was the one with the disability, I found that I was the one trying to comfort other people. I also found that, as a woman, some people took advantage of the fact that I was nice, and that I was a bit of a people pleaser,” she said. “I finally had to pick myself up and get myself together. I started to learn what my triggers were, and to learn what I actually have to do to take care of myself. I did have several grand mal seizures between the ages of 16 and 21, but once I started taking better care of myself, I was able to focus on living my life as fully as I could.”  

Part of this process included returning to a passion that Josie has nurtured since childhood: writing.  

“I have always had a passion for writing. When I was little, I would go on my desktop and just type and type. As I got older, I started to keep a regular journal, too,” she said. “I also always loved having books around, and I loved the sensation of having a book in my hand. So I always knew that I wanted to write and publish a book one day.”  

In 2022, that lifelong goal became a reality when Josie published Lucky Feels Fuzzy, a children’s book about a kitten with epilepsy.  

“I wanted the story to be simple enough for a child to understand because I feel like we have to start teaching kids what epilepsy is at an early age. If people understand epilepsy more, then I think we could really help reduce the amount of stigma that there is around epilepsy,” she said. “People don’t have to experience being made fun of for a chronic condition, they don’t have to be scared to apply for a job or tell someone that they have epilepsy. And I think that change can start with kids learning about epilepsy at an earlier age.”

The book includes different animals of different colors, helping to capture the realities that anyone can have epilepsy, people can be diagnosed at any age, and that epilepsy doesn’t target a specific group. It also focuses on the real experiences of living with epilepsy, which Josie hopes will help dispel some heartbreaking assumptions about the condition.  

“Some people treat us differently as soon as they learn we have epilepsy. They’re taught that we’re possessed, that we can’t live full lives, or that we’re incapable of fulfilling our dreams and desires,” she said. “But none of that is true. And there aren’t that many disabled Latinas with epilepsy out there, so I make a point  to share my truth and do what I can to help other people feel less alone.”

Now age 28, Josie has high hopes for her first book, and for the sequel that will be available soon, called Lucky’s First EEG, which captures the realities of this common epilepsy diagnosis tool.  

She’s also hopeful that sharing more parts of her own epilepsy journey will help to normalize the diagnosis and acclimation experiences for others.  

“We have to know ourselves better than anyone else, and I believe that we have to celebrate what we experience because if we don’t take care of ourselves, if we don’t fully understand what we’re dealing with, we can’t get anywhere,” she said. “I want people with epilepsy to celebrate life and celebrate who we are – and not care what anyone else is thinking.”